Sunday, September 27, 2009

Latest Check Up

We made the drive up the hill to Primary Children's this week. It was time once again to check in with McKay's cardiologist. After a quick weight (just shy of 26 pounds--honestly, can you believe that?) and height update (32 inches--90th percentile), our big guy got a quick EKG (the procedure you see in the pictures) and then faced his moment of truth with the pulse oximeter.

We have such a love-hate relationship with this obnoxious beeping wonder. We love it when the machine spits out good numbers that let us know Mac is receiving all the O2 he needs to keep all his systems running. We also marvel at how such a tiny little light on a such a chubby little toe rules many of the most critical decisions we will ever make. We hate it when the numbers are low. That means it's time to end the chit chat we're making in the moments before the numbers settle in for a good read and the mood in the room is about to change. Yes, we hate the pulse oximeter for its ability to provide a deep and silencing buzz kill.

This time around the reading was low again (68 -72) . Not good. He should be between 75-85. But then again it's low 90 percent of the time--always has been. I was sure his cardiologist was going to tell us to start up the oxygen. Instead, she wheeled herself over to the computer and started looking over McKay's history. As her mouse scrolled up and down his information she asked if we'd been spot checking him at home. I told her we had. Then she asked if we had any oxygen at home. I said we did. Then I raised my arm to the square and swore like a Boy Scout that our home monitor always read between 75 and 78. She turned back to the computer.

A few minutes later she said she wanted an Echo cardiogram done before she made any decisions. And just like that we were in the Echo room trying to get McKay to take a bottle watch a show and lie still why the tech spread goo and her magic Echo wand over his chest to take an inside look at his how his valves were functioning, specifically his aortic valve. To my great amazement McKay was the perfect patient. They took amazing pictures of his heart in all its funky glory. I really hope to get a video of it someday. It is hard to wrap your brain around how a heart that is shaped like that functions at all. The body is indeed a wonder.

The best news of the day came when McKay's cardiologist told us that the echo looked great, practically perfect in fact. All systems are still as tight and strong as we pray they will stay. Even better, the echo convinced her that Mac could stay away from the tubes for now. His low saturations are still a bit of a mystery, but the news earned a deep exhale from us.

McKay is so active right now, huffing and puffing his way around his kingdom. He gets winded quickly and has a tendency to rest his tired little noggin on the carpet for a few moments now and again, but once he feels recharged there is absolutely no stopping him. He is a one-man wrecking machine without time or patience for the tubes that would prove something akin to tying a lasso around his head. I seriously don't know how other moms do the oxygen thing once their little ones are walking and crawling. My hat is off to you for all the patience and worry that must come with that necessary evil. I know we will get there again, but for now, we're tube free.

We made several promises to check his sats regularly, to come back in if his lips get any bluer or his naps any longer. Yes, yes, and yes. I guess this is all part of being in waiting mode. Waiting for the next step. Waiting for the hospital to find another senior surgeon. Waiting to see if we will seek experience and know-how out of state. Waiting to make it through another season of sequestering Mr. Mac away from the many, violent germs that have just begun to make their debut. Waiting, waiting , waiting for answers.

We have decided that McKay will get the H1N1 shot this year. We had been on the fence about it until our card said to get the shot. Apparently even if the kids can beat the flu, the lasting respiratory effects are severe (and could prove a fatal complication for little sweethearts). She says the outbreak will be fast and widespread and encourages getting the vaccine as soon as it's available. Decision made.

As long as we're talking about shots, Mac's next (and hopefully last) season of Synagis shots will begin in a few weeks. The vaccine is designed to prevent RSV. The bummer of this miracle drug is that it only has a 30-day life in the body. So once a month for the next five months McKay will receive his dose of this nasty blessing. The shot is a thick, painful one that takes longer to give every time the dose is increased. (I've honestly never seen a shot given so slowly. It makes me tear up every time I help the nurse hold his chubby little thighs down.) Mac's dose usually goes up monthly as it is tied to his weight. The cost of the shot is also based on the amount of the vaccine required. Last year we watched the cost of each shot increase from about $1,300 all the way up to over $2,500 for his last shot of the season. Oh well. We'd rather meet our deductible preventing illness than in the hospital fighting it!

So much is swirling in my head about the next 12 months of this journey and all that it will bring. Yes, we are anxious. But we are so blessed to still be on the journey. There are many who would do anything to have my worries. Instead they only had their babies for a few hours, or days or months, or --heaven forbid--years, before the Lord called their courageous little angels home. I think that thought and say a pray of thanks to accompany it every day.

I look at examples like Paul Cardall; a miracle of a man who says, at 36 years old, that at just a few weeks post heart transplant he has never felt more healthy in his life. The truth of that statement makes me want to sing for him and weep for these little warriors. How do they feel every day? Would you and I even get out of bed if we felt their "normal"? What is it like to be them? Will they ever know the difference? McKay's smiles tell me that there is much of life worth living no matter the vessel God has asked you sail in this life. And sometimes when we catch each other's eyes in the quiet moments of the day, I know he is grateful his father and I made the decision to let him sail. No matter the length, no matter the circumstances; life is a gift.

12 comments:

LOVE that post!!! I am so glad to hear the great echo results and wonder what it would be like to hear those words. One day. Paul's story is amazing. I watch Owen tire and often think of how he will thrive once a functioning heart is transplanted. We think of Mckay often. I'm thrilled that he's doing so well!

Strange with his low low sats.... do you ever hook McKay up just at night? That is Grant's regimine and it helps him sleep better so that his energy during the day is higher. Thank heavens for being tube free for now! I am glad to hear that you guys are getting the swine flu vaccination...there has been such a debate on the IHH board and we were planning on it, but I have been hearing mixed things from other's cardiology reports. Let us know how it goes for him ok?

Thank you so much for that post! I'm glad the echo could settle your worries with the sat. levels. I was so touched by your words, always am! Thanks for helping me feel more comfortable with the H1N1 vac. Paul's story is so amazing and gives me so much hope! I am also thankful for my day to day trials with my sweet-HEART, it sure beats the alternative. Hope we can try for lunch again real soon, let me know...HEART HUGS

What a wonderful post, thanks so much for sharing! It's funny how we all feel the same about our special sweethearts...so much gratitude even with all of the challenges and uncertainty that comes with it. I guess that's why it's so sweet.

And Maddie's sats are the same as McKays...she's a mid-70's girl. No O's here either since her echo looks great as well. I think it's just her...she's always been a very low satter! I hate the mystery of it but she's doing well so that's what we go on and try not to borrow too much trouble with it.

Happy to hear his appointment went well and that's he's doing fantastic! Heart hugs :)

Thanks for sharing. I have found a new blog that I love to read. You are amazing. He is so blessed to have such great parents. Well, I only know Matt from what you've told me, but I KNOW he has an incredible mom! My friend is running the marathon this weekend too, so hopefully we will see you down there. Good luck on your qualifying time.

That is WONDERFUL news. You know- sometimes, Jack's 02 levels show up HIGHER when the pulse-ox is on this thumb. It's weird. But we did a lot of experimentation this summer in the hospital and discovered that his thumb gives out the best readings. McKay will huff- but believe me, he will stop some day. He'll learn his limits, but also feel better enough to push them.

I'm so glad you didn't go home on oxygen. As one of those mom's that had a walking toddler on O2, yes it is annoying, but I was also surprised at how great Jack was about it. He'd leave it on and step over it, he'd pull his tank around if he needed to. But the worst part was not having long enough tubing to allow him to run all over the house- which is what he wanted.

Good JOB McKAY!! Here's to a smooth winter season...without ANY germs or colds or ANYTHING.

Glad to hear the check-up went well. That little McKay is such a chunk. I picked him up at church a few weeks ago and couldn't believe it! He does have such an infectious smile. Just thinking of him right now puts a smile on my face!

Live. Laugh. Love.

About McKay

Mr. McKay is a miracle. He was diagnosed with a soup of congenital heart defects while still in utero including: double inlet left ventricle (DILV), Transposition of the Great Arteries (TGA), a large ASD which has now been modified to create a single atrium, pulmonary atresia, and dextrocardia. He has undergone a series of three open heart surgeries to reroute his plumbing into a flow more likely to meet his growing body's demand for oxygen. He is post BT Shunt (August 22, 2008) and post-Glenn (November 25, 2008), and most recently traveled cross country to have the Fontan procedure at the Children's Hospital of Philadelphia (July 9, 2010). Today, McKay is a growing near-three-year old challenged with developmental hurdles we are anxiously trying to help him overcome. McKay offers heart baby hope of the most robust proportions. This blog chronicles our adventures.